Special report on lack of social care available to cancer sufferers

Almost half of people with cancer find the emotional effects of the disease more difficult to cope with than the physical symptoms, according to a new study by cancer charity Macmillan Cancer Support.

But the social care and support cancer patients are seeking is often not available, the research revealed.

“Cancer treatment focuses on the medicine and the technology,” said Harry Cayton, Macmillan social care adviser.

“Cancer is not recognised in the social care system. It doesn’t open doors in social care unless it’s in combination with something else like being old or disabled,” added Peter Cardy, Macmillan’s chief executive.

Yet as survival rates improve and the population ages, more people are living with cancer and many of them have social care needs.

A quarter of cancer patients in Macmillan’s survey feel they have nobody to talk to.

Half say they have experienced depression since diagnosis: six in 10 of these people did not receive any help or support. Half want information, advice and support about the emotional aspects of a cancer diagnosis. But four in 10 of those people get no help with this.

Damage

Macmillan points to the damage that having cancer can do to people’s finances and relationships.

A quarter of people with cancer say they experience real difficulties in relationships with partners as a result of their cancer diagnosis.

Macmillan spoke to 606 people with cancer for its survey. Family and friends of people with cancer, and others not affected by cancer, also took part.

People with cancer now tend to be treated as outpatients or at home, which can lead to strain on family and friends, who may become carers.

But despite widespread anxiety and depression, relationship and money worries and issues for carers, links between social services and cancer patients are poor.

Thirty five per cent of people with cancer surveyed do not feel confident about how to access social care and support.

Only 21 per cent of people with cancer felt the needs of their carers are met by social care and health services

“People with cancer are not a priority for social services departments,” said Macmillan’s Cayton.

Suzy Croft, chair of the Association of Hospice and Specialist Palliative Care Social Workers, and herself palliative care social worker at St John’s Hospice in London agrees that people with cancer need more support for social care needs.

“A lot of people at the point of diagnosis miss out on support for a range of needs. Very often palliative care social workers become aware of the lack of support people have had for a very long time. In particular people with cancer are often shocked at the lack of support around finances when they are first ill and not eligible for disability living allowance,” said Croft.

Quality of life

In recognition of changing patterns of treatment and survival, Macmillan Cancer relief has now changed its name to Macmillan Cancer Support and is refocusing its activities accordingly.

Cancer treatment should “go beyond treatment of the disease and address matters that affect the quality of life and wider social needs of people with and affected by cancer,” Macmillan has stated.

The charity is piloting social care programmes with Manchester, Hampshire and Bexley councils, working with social services and NHS staff. It already runs telephone helplines, including one on benefits and offers help and support to carers. There are also Macmillan social workers, less well-known than the famous Macmillan nurses.

The charity is calling on social services, the NHS and the government to provide more social care support. It also urges better integration between social care and health, which is currently lacking.

Health dominates over social care within palliative care teams, according to Croft.

“Palliative care social work is an essential part of the multi-disciplinary team but is sometimes seen as dispensable when cuts are being made, or if a service is starting up a social worker may not be seen as an essential post,” said Croft.

She feels that palliative care is becoming increasingly about medical needs, not moving towards social care needs that Macmillan is proposing.

Shortage of workers

One barrier to a swift expansion of palliative care social work is a shortage of social work specialists. The Association of Specialist Palliative Care Social Workers currently has just 240 members.

The government has pledged to double spending on palliative care. Proposed approaches were outlined in the health and social care white paper published in January this year, with detail and funding arrangements to follow.

Plans include end-of-life care networks, being piloted by Marie Curie Cancer Care, bringing together health and social care staff. Additional support for carers is also forthcoming.

This action is not before time.

A 2005 report from the NHS Confederation called for palliative care services provided by social care staff to be expanded.

It found that most terminally ill people wished to die at home but a lack of palliative care often makes this impossible. It called for more integrated working between social care and health staff on provision of end-of-life care.

In 2004, a House of Commons select committee report on palliative care found that too many patients were dying at home “in squalor” because of lack of social care support.

The evidence is clear. People with cancer and other terminal illnesses certainly need support. Whether social care has the funding and culture to provide more of this support in the future is less clear.